There's a tax you pay when you're chronically ill. It's not on your payslip. It's not deductible. And nobody who doesn't pay it knows it exists.
A phone call costs me triple what it costs you. Not in money — in energy. The effort of being upright, alert, verbal, present. Of managing my heart rate while sounding normal. Of processing information while my brain fog tries to eat the conversation. You hang up and move on. I hang up and lie down for an hour.
A doctor's appointment costs a full day. Not the fifteen minutes in the room. The travel. The waiting. The adrenaline of advocating for myself. The cognitive load of explaining my condition to someone who may or may not believe me. The recovery afterwards.
Grocery shopping costs me the rest of the afternoon. Standing in line costs energy I was saving for cooking dinner. Cooking dinner costs energy I was saving for being present with my daughter.
This is the spoonie tax. Every action has a surcharge. And the surcharge isn't fixed — it changes daily, hourly, without warning.
Some days the tax is manageable. I can do three things. Four if I'm careful. Some days the tax is so high that getting dressed is the only thing I can afford.
And here's what makes it worse: the tax is invisible. You can't see it. So when I cancel plans, or say no to a meeting, or don't answer your message for two days, it doesn't look like I'm managing a complex energy budget. It looks like I don't care.
I care. I'm just broke. Not financially — energetically.
The spoonie tax affects everything. Career decisions. Relationships. Parenting. Creative work. You don't just choose what to do — you choose what to sacrifice. Every yes is a no to something else. Every expenditure of energy is a withdrawal from a bank account with an unpredictable balance.
This is why accessibility isn't just ramps and screen readers. Accessibility is understanding that some people are paying a tax you can't see. It's designing meetings that don't require two hours of recovery. It's accepting that "I can't today" isn't laziness — it's mathematics.
The world isn't built for people who pay the spoonie tax. It's built for people with unlimited energy who can't imagine what it's like to not have it.
I'm not asking for pity. I'm asking for understanding. The next time someone cancels, or is slow to respond, or says they can't — consider that they might be managing a budget you know nothing about.
The spoonie tax is real. And we're all paying it. Every day. In silence.